Joe Frank Medical & Recovery Fund
November 20, 2017:
I started this Go Fund Me campaign nearly two years ago, shortly after Joe had a routine procedure which tore the inside wall of his colon. He was hospitalized, treated and monitored. After release, he was told: "You can eat whatever you'd like." Within 24 hours, he was experiencing a blockage. We didn't know this at the time. It was New Year's Eve. Later that night, we went to the ER. Joe was admitted presenting a number of symptoms which promptly landed him in the ICU. "You are very, very, very, very sick," the ER doctor had said.
For the next month in the hospital, Joe was assaulted by a number of tests, examinations and prognoses until finally settling on the fact that, due to the blockage (eat whatever you wish), his heart and other organs worked overtime in order to compensate. In addition, there were unrelated symptoms (pancreatic cancer possibility) -- I cannot remember it all, frankly. Most of it is outlined in the early updates here.
Joe was discharged at the end of January 2016. His recovery lasted until the Fall of that year. In the background: May of 2014: Joe had undergone surgery for colon cancer. The tumor was successfully removed; however, new problems arose as a result. He'd been struggling to manage the effects of that when slammed with the events at the end of 2015.
There have always been - and almost weekly - setbacks since I started this GFM campaign. Many of them minor inconveniences, and others frightening, but resolved.
But on July 13, 2017, Joe found blood in his stool. He was admitted to the hospital where another tumor in his colon was found. Surgery was imperative. But Joe was physically not fit for the anticipated recovery. He needed to build his reserves - exercise, eat 90mg of protein daily. This was the start of a very long period of time before he went in for surgery on October 13, 2017.
Neither Joe nor I have been able to fully return to work since July. During his recovery in 2016, there was precious little time to focus on work. Even though Joe wrote every day and still has scripts for a few radio programs nearly completed. It seemed every other day, we needed to go to a doctor appointment, have blood drawn, physical therapy visits, medication reactions and adjustments. And on it went.
Last July, I rebooted this campaign, there have been far too many events that I have not shared.
I live in a constant prayer for Joe's recovery. I'd love to see him home again, writing. It is what gives him the most joy.
Here's the story posted back in 2016:
In mid-December 2015, my husband, Joe Frank, became ill. This is one in a long list of medical issues he has faced since he was born, beginning with corrective surgeries for clubbed feet between the ages of 3 and 5. He's survived cancer three times - the first time, he was given three months to live when he was just in his early 20s. Since then, he's had numerous hospitalizations and surgeries for a host of issues. Ten years ago, he suffered from kidney failure and was on dialysis for a year-and-a-half until he received a kidney donated by his cousin. In addition, for years, he's been enduring and managing pain caused by severe scoliosis of his spine.
I cannot express how much I admire Joe's courage and will to live. He has heard bad news on many occasions yet possessed the strength, courage and had the good fortune to beat the odds.
I long for that outcome now.
Forgive me for not providing details about what has taken place in the last month. I am in a condition of overwhelm. I've watched Joe face a myriad of diagnoses in the last month which has included sepsis, heart attack and pancreatic cancer.
At midnight on New Year's Eve, we were in the ER at Cedars-Sinai hospital with a dear friend and one of Joe's doctors (who left a party to be with Joe.) It was surreal to see the high-spirited celebrations on television bringing in the new year while in an emergency room hospital setting.
Until last month, Joe worked daily: posting on Facebook, recording material for his next radio program, and preparing notes for future projects. It is my deep hope and longing that he will return to that work. It gives him meaning and profound pleasure. I think some of his latest programs are among his best work.
I dearly wish to see him come home with all of these medical issues resolved soon so that he can begin recuperating.
When he does come home, however, he will be on IV medications which are not covered by insurance. The last time he returned from the hospital for a treatment of IV fluids, our out-of-pocket costs were $1500.00. That was for just five 5 days' worth of medication. This time, he will receive an IV cocktail for a month at minimum.
*update 3/12: Joe was on TPN for 6 weeks. What we thought would be $350 a day is in reality nearly $1,000 per day. (Total = approximately $42,000 which includes the "equipment" - IV pump, saline and heparin syringes, gloves, etc.) The catheter remains in place in case he needs to go back on TPN. The equipment, however, continues to be delivered weekly to keep the line flushes - that is about $1,000 per week. Hopefully, the catheter will be removed soon since Joe is beginning to gain weight again.)
We will need to hire someone to attend to him full-time since he is physically compromised. We don't yet know how long that will last or exactly how much that will cost. We understand that it will take a minimum of 6 weeks and conceivably several months before he gets his physical strength and mobility back. (Today, 1/13, my research shows it could be a breathtaking $200,000 if we have to hire someone full-time for a long period. Again Joe is committed to becoming strong again as soon as possible)
*update 3/16: After a few physical therapists have come and gone, we finally found Doug. He is fantastic. He's helped Joe to walk much sooner than anyone expected. Doug comes here twice a week. Because of the outstanding progress, we only needed to hire someone part-time - and for assistance for just two months. That totaled only $1500.00 (plus equipment .)
Ongoing: Out-of-pocket cost for Joe's usual medications and insurance payments is $10,000 to $12,000 per year. He's had medications added to his daily regimen and he now takes 24 pills a day. We haven't yet received the paperwork from Medicare RX or Medicare Part B (some meds are partially covered by Part B), listing the final out-of-pocket.
Joe's income is based on his work for Unfictional . There was a time when he could produce up to four shows a year, which barely managed to pay the bills. But now our financial security is threatened. Joe is eager to get back to work, but requires sufficient time and care to do so.
Each month over the past 2 years, we are short by about $2,000 to pay bills. (This is no exaggeration.) We live by a strict budget, continuing to draw on savings to get by. Faced with what we know we need to do in order to help Joe get well, we would easily run through those savings quickly.
I cannot express how much it would mean for me personally to have Joe fully recover and resume his daily activities. I miss him every moment that I am home trying to "take care of business." I spend every night at the hospital and in the worst way wish I could give him some of my good health to help him through this.
We sincerely appreciate whatever support you can provide.
Update Jan 30: We are just beginning to receive Medicare notices for how much out of pocket we can expect to pay. But the only notice we've seen so far reflects just the doctors' appointments and tests for the week before the hospitalization - that is close to $2,000.
In the hospital, Joe was seen daily for a month by his primary doctor, an infectious disease doctor, three GI doctors, a hospitalist, an oncologist, and a cardiologist. Every day he had blood drawn and tested. He had a slew of other tests that I couldn't keep track of.
He also now has two new medications that are close to $1,000 per month for both. *Update 3/15: I've been working with Medicare Part B and Joe's Medicare Supplemental. Joe is eligible for a price reduction since these medications are imperative for his survival.
*For more about who Joe Frank is, and details (see the "News" page) that led to this hospitalization see his web site here.
It has been a week, as most of you know by now, that my love, my soulmate, Joe Frank, passed on. He worked so hard to keep going. During the past three months, no setback was met without his great and willing effort to surmount in order to stay with us. He endured unimaginable pain, and yet never complained.
He'd had a very good day the prior Friday. He was in good spirits, lucid, completed physical therapy beyond what anyone imagined he could perform. As he rested between exercises once, the physical therapist said, "I noticed you have poetry books at your bedside. Can you recite something from your favorite poet?" And he recited a few lines from TS Eliot's The Love Song of Prufrock.
On Sunday, I spent the day and late into the night sitting close to him. At night, I held his hand, and sometimes stroked his head. He looked weary as he had been fighting sleep for many hours. When he would start to drift off, he'd jerk awake and look at me. And I'd console him, then he'd drift off again. Sometimes he would repeat my name several times before opening his eyes and I assured him that it was okay, I was right there with him. I hugged him, told him loved I him and cried one time as I held him close in my arms, apologizing that I didn't know what more I could do. But mostly, I sat quietly in love with him. Letting him know that it was okay. It was okay to fall asleep. And he finally did.
For over an hour, I continued to hold his hand until I slowly disengaged mine from his. He didn't move. I sat for another hour looking at his peaceful face, watching his even and steady breathing. His vulnerable body relaxed. I got the phone call at 7:30 the next morning that he was gone. And finally today, I received confirmation that Joe did, in fact, pass peacefully in his sleep.
I shared the following video on Facebook last Monday night.
We had so much fun together. There was not a day without laughter in the 18 years we spent together.
"No words will ever possibly capture the feeling of my shattered heart......
Joe left us this morning.
I am numb. Took a sleeping pill at noon and couldn't sleep. I stumbled across this video this afternoon. We were starting to go to bed. It was last September and he was just getting over a cold. I don't know what we were talking about, but we always had good conversations when we went to bed. And this... was the song he sang in full at our wedding nearly 8 years ago.
I love you Joe. They can't take that away from me."
Yesterday was another turning point. And it was a welcome one! When I arrived in the morning Joe was at last himself mentally. Also yesterday, he began to eat and drink fluids again. What a relief. (Although he still is on antibiotics to fight the UTI.)
But Joe has become considerably weaker since Tuesday. Without doubt, the improvement he requires in order to get home will take a lot of effort, time and patience. And sadly, based on experience, these ups and downs will continue. Sometimes, it is an incredibly difficult day disrupted by a glimmer of hope and the next day is just the opposite. Part of the recovery (I'm just beginning to understand) is that it will not smooth out for awhile.
I only learned on Friday that the first day of physical therapy on Tuesday was to push him in order to document his limits. The PT and OT technicians explained they will be proceeding much more slowly with him. But they also said he'll have to eat a lot in order to regain muscle. Without that, there is only so much physical therapy they can do.
On Thursday, I spent a long time talking with the Doctor and Nurse Practitioner from Cedars who are following Joe. There was one line item I was most concerned about: my observation that because Joe was continually sleeping, not eating, and nearly impossible to wake up--he was not getting any pain medication. (I had confirmed it with the nurse.) Because this has happened in the past, I recognized the symptoms of withdrawal: confusion, disorientation and hallucinations. (Other factors contribute to his mental state as well, which compounds the problem.) I was so heartened that they took the time needed to discuss a new Plan in order to safely reintroduce a low dose level of pain medication, and to also supplement his diet so that he will start to eat again.
He was yesterday mentally stable and re-oriented. He is acclimating to the facility, understanding that it is not the hospital. Having said that, the reorientation is still sharply ebbing and flowing. Hospital delirium is difficult to overcome. (Google it.)
One sticking point in his mental orientation was the real fact in his mind that "they won't let me call you." Joe has lost his dexterity almost completely. (That's where occupational therapy helps.) He has not been able to use his cellphone for at least two months. I had set it up so that after pushing the home button twice, my name in his contacts list would appear and he could just push my number. (We practiced often, but he was unable to accomplish it on his own.) I encouraged him to for ask help from a nurse--but given his mental state, he did not trust them enough to ask.
When I left early last night, I showed him again how to call me. "Home, home, click on my number." Again, I suggested help from a nurse if he found he could not do it.
Shortly afterwards, I entered Whole Foods to get something for dinner. And my phone rang with the familiar ring I'd set up indicating the call was from Joe's cell. I dropped the hand-basket and went outside.
"Oh, Michal. I'm so glad I got you. I want to make sure you got home okay."
"I'm fine. I'm so glad to hear from you! Are you okay?"
"Yes. I just didn't know if they would really call you."
"Okay, yes. They will. Any time you want to call, you can call. I'm okay."
"Okay. I love you."
"I love you, too."
PS -- As weird as it is to say: I owe a debt of gratitude to Trump. Joe showed no interest in anything except sleep since early Tuesday. He has no windows, no point of reference for time (he did not trust the wall clock - always challenging me whether it was day or night). I thought cable news, which he normally enjoys, would help reorient him. Finally, on Friday, he allowed me to turn on the TV. The explosive nonstop coverage of Wolff's book caught his attention. And so rebooted his reorientation process.
A roller coaster ride is just not an apt description. When I posted the last update, Joe was originally scheduled for discharge on 12/28. For some unknown reason, the night before, he was transferred to another room. Short story: Another potentially serious setback. However, shortly afterwards, the doctor who performed Joe's original surgery came to the rescue. Within hours, Joe was alert, lucid, eating, drinking, and ready for rehab. (New Year's Eve, I made him a dinner of liver, asparagus and baked potato. He was reading a book of Paul Bowles Short Stories and the New Yorker. He was himself again. He just needed to get his body back in shape. Though both of us knew this would be a daunting effort. We talked about this often.)
So, in the early evening on New Year's Day, as Joe was admitted to an excellent rehab associated with Cedars, we were both optimistic. He had a great dinner I brought in from Bristol Farms. And he had a very sweet roommate.
The next day, things began to deteriorate.
Many variables contributed to this: doctors and nurses are unfamiliar with Joe, what he can tolerate, how he lived a robust and self-reliant life just a few months ago. I felt eerie echoes of our experience at the hospital in Santa Monica. Yesterday, the nurse's aide who was helping him eat said: "He just refuses food and water. Tells me, "No!" So.... Look at him - he's on IV fluids now. Not good. And he's so thin...." Stifling tears, I asked her to please not talk to me about it.
Despite my best efforts, this decline continues. He has another UTI from not getting enough fluids. And is on another round of antibiotics.
The glimmer of hope was from the physical therapists yesterday: they acknowledged that perhaps it was too much too fast and that the disorientation that Joe was experiencing is common for the first few days. When he becomes accustomed to the new routine, he will bounce back.
I've typed up notes to distribute to the various doctors and nurse practitioners who are taking care of Joe. I've set a schedule to visit him at a certain time each day, to try to reorient him, encourage him to eat.
I am doing everything I can. In the end, it will come down to Joe - primarily, his willingness to eat and drink. That is a very difficult obstacle to surmount as I try to help him.
Too much continues to happen too fast. I cannot bear recalling the details of what has transpired since the last update, so I will keep this brief. Signs of infection were evident within hours of Joe's discharge and return home. I called 911, he was admitted back to the hospital where his doctors are (not the one he was discharged from), and he was swiftly treated and looking better within hours. Now, he looks as well as I remember when he was initially discharged from here on 12/7 - although he is considerably weaker.
Joe is scheduled for discharge to a rehab facility today. This facility is associated with the hospital, so he will be monitored much more closely. A few days ago, I asked Joe for one Christmas present: to eat. Even if it's pig slop. Please give that gift to me. And drink. Three times in the past three weeks he suffered from serious dehydration. I have expressed all of my concerns to doctors and, once Joe is released, I'm sure they are bracing for my continued emails, phone calls and texts. (Yes, one of them trusts me enough to give me his cell number.)
Last night Joe and I watched a couple of episodes of Ken Burns' "Prohibition" series. We both love seeing old footage, stills, and the feeling of timelessness that details of the past afford us. I massaged his head a little and he stopped me suddenly. "I'll fall asleep and I want to enjoy this time together." So, we watched a little more. He expressed his sorrow that the nurse who'd been tending him since he was transferred last evening from a different floor was now off duty and not returning tomorrow. He expected the next nurse not to take as good care, and readied himself for disappointment. I massaged his back.
After a little while, I said: "Tomorrow, let's only comment on the good that we are given. Don't even talk of the bad, or disappointing stuff that comes up." I offered to rub his head again. "It's okay if you fall asleep. Really." I had only just begun to rub his head when he fell off to sleep. He jerked a little as he relaxed into slumber. I continued to just brush his forehead lightly, running my fingers back through his now long hair. I pulled the blanket up so that it covered his neck. Cozy. Tucked him in. And left. Hoping for a good day.
Joe arrived in the ER with septic shock. Unless caught in time, this can shut down every organ. This is the third time I've been with Joe when he had sepsis. I marvel at--and am deeply grateful for--his spirit and the amazing grace afforded him.
I was with him yesterday morning for a few hours. He was sleeping mostly, and exhausted. I returned in the early evening to find him still sleeping. I spoke to him and he did not respond. A little louder, I told him I was there. He nodded his head. I asked the nurse why he was so sedated. She said he was bright, alert and talkative all day - he'd asked about me, and they'd had a conversation about how he and I met. Within a half hour, he woke up and we spoke. His speech was labored. He's incredibly frail and exhausted. This has been a huge setback. I pray for whatever reserves he has to rally enabling him to regain strength. It helps that he's now getting topnotch care and attention. A deeply poignant moment was when he looked at me and said earnestly: "They respond to me right away here." Magnifying the sense of neglect he'd been experiencing in those hellish days at the rehab facility.
Papers are in process for his transfer to Cedars; however, until Joe is fully stabilized, he will remain at the other hospital. Though not as critical, he still has an infection impacting his body. I overheard one nurse on the phone with the doctors last night and it sounded like they were giving a "go" for transfer soon.
Still, I'm only able to get a few hours of sleep at a time. I'm not complaining. Last night when I saw him, I felt a strong wave of relief. He is being taken care of. The magic of the love of God or the universe or humanity happened as well: The nurse and I hit it off immediately. We had a very long talk about home health aides. And she provided me with excellent information.
The Plan: Joe: to transfer to Cedars for his team of doctors to devise next steps. Me: Full throttle to put in place home health aides, nursing, and physical therapy at home. He's not going anywhere near a rehab facility again.
I just wanted to share a story I forgot to add to my contribution, of how I discovered Joe's work about 20 years ago: A friend and I were driving home to Chicago from Wisconsin, on the road somewhere in the middle of nowhere. My friend, Rob, was scanning stretches of static on the radio when we heard Joe's voice break through. All I can remember from the show was an image of topless women baking bread, but within five minutes Rob had climbed into the back of my van, found a coat hanger, and was hanging halfway out the passenger window at 65 mph twisting it around the vehicle antennae. This managed to get us through the show, and we rarely missed another. I believe it was WBEZ on Sunday nights, our gang would get together religiously and no matter how raucous we got drinking beer, we all fell silent at broadcast time. I think one element of Joe's writing that struck us all was his uncanny gift to include rich and specific content during at least one portion of every show, that seemed to speak directly to us. Get better Joe! You're an inspiration to many of us, to this day, of how a unique voice can be heard and treasured even in an age of unprecedented deregulation and corporate consolidation of the public airwaves.
Michal, thank you for your selfless gift of love. The kindness and compassion exhibited in your care is appreciated by everyone who loves and admires your husband. As someone who was very ill for a long time, I’ve experienced the selflessness of loving caregivers, both family and hospital staff. I cannot imagine ever having survived without it. And while it may often seem impossible, nothing worth doing is ever easy. Joe, I’ve been a devotee since the early KCRW days. Your gift to the world—your tireless writing and recording—ensures your immortality. I cannot adequately express my gratitude for your hard work or accurately measure the impact you’ve had on my life and the world. THANK YOU for putting pen to paper. And to anyone who has ever endured life-threatening illness and financial hardship simultaneously, please contribute to Joe Frank's GoFundMe campaign. For me, he is in the top five of all creative geniuses who’ve ever put pen to paper. His radio shows have been a lifelong companion and his body of work represents the imaginative greatness the mind is capable of. Please, please give.
Hoping they figure this out for you Joe. Believe me when I say I can relate to what you are going through. Fortunately, I am blessed with doctors who have gotten me through some extraordinary maladies. Unfortunately though, there is very little known about my current affliction. I'm into my second year of this and frustrated as heck, but I still believe that everything my doctors can do is being done. I've decided to donate my body to the SUNY at Buffalo school of medicine upon my demise as a way of giving back. For now I'll just grin and bear it and hope for better treatment options. Hopefully better days are on the horizon for both of us. Godspeed my friend ....
Hey Michal and Joe. I am very happy to get this update today. I know the anxiety of flying solo again will subside. Soon you'll be back to sitting in the same room doing two entirely different things, in total comfort and togetherness, not even speaking to each other. Or whatever. Maybe you'll be watering plants, Michal, and won't have to think about watering Joe, too. (Smile inserted here). I hope you both start getting some really great uninterrupted sleep. xoxo
Thank you Thelma - the Cedars social worker called and Partners in Care is an organization which recommends different care givers. It is more like a directory - some of the types of services they refer one to are covered, and some are not. The type of care Joe physically needs (ie, someone here all the time to put him in wheelchair to go to restroom, etc) is not covered, unfortunately. But Joe is committed to doing everything he can (isometric leg exercises and follow doctors' orders) to regain strength.
When Joe was last in NYC doing a show I had the chance to actually hug him and was too overwhelmed being near him. He is my favorite writer. I majored in American Lit and secondary education and have read a lot. There is a brilliance and a depth in your husband that is staggering. Even what he has not written , his powerful essence. God, I love him. Stay strong and get through this because there is no other Joe Frank and there never will be. So ironic that his name is so simple and common and he is the antithesis of that. Again, sorry to gush, but I love him so and I am not alone.
This afternoon, I listened to "Goodbye" - the show that was sent to me, for my contribution, - and it was fantastic. It brought me back thirty years, to when I first discovered Work in Progress on the radio. I have been captivated, for all these years, by Joe's unique perspectives and presentations. I have been greatly influenced and inspired by Joe Frank's work over all these years. I was won over, initially, by his remarkable ability to always address things that no one else seemed willing or able to address. And I have been held consistently in awe at his ability (through writing, delivery and performance) to simultaneously address the humor and sadness intrinsic to things. He has unflinchingly addressed the mundanity and absurdity of the world around us, and plumbed it to its depths - delivering wondrous truths through the cleverest use of delicious lies and fibs. Thank you, Joe Frank. Thank you.